Friday, April 12, 2013

{suddenly this feels like AA}

On Wednesday I finally got to see a neurologist and finally got some of the answers I have been looking for. So now I have a firm diagnosis, something to define what is happening in my life. I'm not stumbling in the dark or wondering about the what ifs. It is something that can't be cured but it can be "managed". For now I am thankful that it wasn't something else, something degenerative. But it is still hard to come to terms with. Life, as I knew it, will never be that way again. And I think this is the part I am finding the hardest to deal with. It isn't just a broken bone that is going to heal, or an infection that is going to clear. I have a chronic disorder {is that even what they labelled it?} called fibromyalgia

I do a pretty good job at keeping it together, or at least making it look like it. But the truth is I don't have it all together and I'm not coping. My house would be the first tell tale sign for anyone who knows me well. Lately it has been strewn with dirty clothes and dishes, toys all over the floor, clutter all over the benches. Don't even ask me when I last time I moped my floors or scrubed my bathroom.

Yes this is me. Queen of clean and everything in it's place.
No I haven't gone to some intense therapy or finally given into the "it'll wait", "don't stress too much", "everything can't always be perfect" slogans.
My life has literally gone beyond my breaking point.

I can't tell you the last time I read my kids a bedtime story or didn't get angry and yell at them for asking me to tuck them in bed. I haven't met my kids teachers and we just broke for term one holidays today - I have had eleven weeks! serious soaking in the guilt of bad mothering.
Everyday I feel I fail them more.
I don't know how to react when I see their behaviour because I'm not well again or I haven't made it to something for school - yet again.
I don't know what to say when they yell and cry at me for always being sick and never taking them to do things anymore or having their friends over to play.
It breaks my heart to know I am not the Mummy I was.

So what has stopped me from all these things?
Have I suddenly done a reverse flip and learned to be the opposite of everything I ever was?
Because some days that's exactly how it feels.
I don't know what happened to the woman who enjoyed life, looked forward to doing things with her kids, was proud of her house, spent every spare minute baking, sewing, crocheting or some other craft. What happened to the lady to looked forward to seeing her friends, couldn't wait to pick up a new book to read or see a movie? Where is the drive that taught me to write with both hands just to retain study information or my passion for music?
{yes I have pretending to try and still do all these things over the last few months to keep up appearances but it just ends in tears with me feeling exhausted and inadequate}

Instead I have been swapped for someone I don't even recognise. Someone in unbearable pain - constant headaches and migraines, burning and aching muscles, tingling and numb limbs, chronic fatigue, irritable bowel, a dairy intolerance, disrupted sleep, multiple chemical sensitivity. And those are just some the physical symptoms.

Then there is the days I can't think straight, or decipher words spoken to me. When I can't get words out because I stutter or jumble them up or can't find the word at all. When I can't concentrate to read, drive, have a conversation or even watch tv. Or when I am so emotional, angry, grumpy, sad, anxious, and the most common of my symptoms vacant.
Brain fog they like to call most of this except unlike fog it isn't just there for an hour or so in the morning before it clears {It can last hours, to days, to weeks - jumping between various symptoms or stuck on one}.

I'm sure there are only two people who see me at my worst. I know I have sometimes let friends in on a little but I never fully let my guard down. But for most people they wouldn't know any of this existed.
When I go out I suck it up and I pull it together the best I can. I hide behind dark glasses and sarcastic comments, when all else fails. When life is even to unbearable to pretend for those few hour I hide.
I stay home and I hibernate.
I shut myself out and I avoid at all costs.
Never letting anyone see the reality of this world I am in.

But the reality is it is getting too big for me to expect just one or two people to carry the load of. I see the worry and the wear on their faces and know I need more help. So this is just step one. Admitting I have a problem and I need some help and I am not okay anymore - even though tomorrow I will still smile and still pretend to be. This is now my life not able to be cured but somehow needing to be managed.
{(without caffeine) which when you already feel extremely tired and crap and it has been the only thing to get you through the last few months it is a hard thing to hear}

3 comments:

Jess...how horrible your daily reality is, yet you put on that 'suck it up face' as you call it and noone knows to ask or offer help. I worry about you every day and wish there was more we could do to help. I will just have to keep telling you we are here to help and soon you will take us up on our offer. Although life is hard, I am so blessed to have you as a friend - even though you are snorting at this and thinking that you haven't been the kind of friend you used to be - I look forward to seeing you when you can and to seeing you learn to manage this diagnosis. I'm thrilled to bits that it isn't life threatening, and devastated that it can't be cured. hugs my dear!! See you soon.

Wow Jess, brought a tear to my eye. Must admit that u do put on a brave face on the outside, i wish u all the best n hope for better things. U r a lovely lady and a great mother n wife, never underestimate how big yr heart will always be. xxx Ang

I think first thing you need to see a mental health doctor or doctors they have been a big help in my life. I am 58 and my kids are all on there own. I suffered for 30 years and just the last few years I finally found some doctors to help me and meds to help as well. My meds work together during the day to help me sleep at night. I also do Bio Feedback it helps me relax and cope. You have to think of you first. So you need all the help u can get from family and friends with the kids. Hope things get better for you have you thyroid checked also and your vit D level. Good luck.